Friday, October 31, 2008

This is a great family I've found. Food and water are always available. I have lots of the rawhide chew bones that I love, and that Kong thing - Wow! Never knew such a thing existed, but when my two-legged mom fills it with peanut butter, I could sit and lick/chew on it for hours. But I have noticed one strange thing about this family - all the furry, four-legged members are trying on their costumes for Halloween. I was worried that I wouldn't have a costume, but my two-legged mom has come to the rescue. She had three for me to try on.

The first costume was me as a surfer dude. Not bad, but might be a little cold for nightime trick or treating.

The next was mom's Princess Pink costume. Yea right...

But finally I found the perfect one - my Superdog costume!! What do you think?

Thursday, October 30, 2008

that this post is my 500th! Who would have thought I have that much to say? Okay, okay - just about everyone who knows me.

for the positive and productive IEP meeting I had earlier this week. Yes, it was only concerning one small thing. Yes, my complaint with the state Department of Ed is still pending. Yes, there are still LOTS of issues. But Monday's meeting worked.

for hot cocoa on a cold rainy night

that Rocky the dog has finally settled on his Halloween costume. Check back tomorrow for the great reveal!

that the price of a gallon of gas dropped below $2 this week! The kids and I may actually take a short road trip this weekend.

for the pumpkin cheescake one of my co-workers brought in yesterday - pure Heaven sheathed in a zillion calories

for flannel pajamas, and the fact that I have no significant other to complain if I want to wear flannel pajamas to bed every night

that Ashley's school has finally caught up with her red obsession. Today was red day at school.

that Cloris Leachman finally was ousted from Dancing With The Stars

that my boys both seemed to like their birthday presents and their birthday dinners. I just can't believe they are now 18 and 16 years old.

Wednesday, October 29, 2008

My local news station ran a great story this morning about a group of New York school children learning sign language after school. I tried to find the video they ran because the children were quite charming, but I couldn't find it. I did find a written piece about the program and it is shown below. I really wish more school districts would consider this. Everytime I have heard of such a program the thing that impresses me the most is that the children love learning sign language.

New York school kids learn unique life lesson October 29, 2008 10:06 AM

When you think of after school programs, things like sports, music and art probably come to mind.

But some children in New York City are involved in a more "hands-on" type of activity.

7th grader Stephanie Arbelaez has already used what she's learning in her after school program sign language.

"I was walking in the street and I saw this man and he was trying to get help because he was elderly and he couldn't ask for help. So I told my mom he was saying he needed help, so I told my mom and she helped him cross the street," said student Stephanie Arbelaez.

This is a different kind of after school activity once a week.

Students at St. Sebastian School in Woodside, Queens learn to sign with a volunteer sign language interpreter from the Little Angels Foundation.

On the day we visited, the kids were also working with hearing impaired young people, trying out what they've studied.

"I said, 'hi my name is Conor.' and I said, 'what's up," said student Conor Hurley

It's a chance for these children to learn something new but also something larger.

"Respect for people, all people, deaf people certainly, but all types of people. That's what this program promised to do and that's what it did," said principal Joann Dolan.

The kids started with some basic expressions, the alphabet and numbers.

Why, oh why, did you bring that HUGE dog into our home - excuse me, my home? You knew I was the 'top dog', well, 'top animal' in this family. Now you've upset the entire balance with this new, BIG dog. I am NOT happy....signed, Winky the Cat.

Tuesday, October 28, 2008

My brother, Carl, showed me a website last weekend called The Foundation For A Better Life. The Foundation is a non-profit organization dedicated to sharing the values that make a difference in our communities. They create public service campaigns that model the benefits of a life lived by positive values. By doing so, they hope to inspire people to make values a part of their own lives, and then to communicate the benefits to others.

The website is packed full of positive vibes, especially the videos of the TV spots they have created. I've included my absolute favorite one below, and love the message that sometimes looking at a situation in a different way can yield wonderful results. I suggest that you visit to find your favorite!

Monday, October 27, 2008

A while back, I told you about the wonders of the new BidetSpa toilet seat that was installed as part of my bathroom remodeling. And then, the BidetSpa company so graciously agreed to provide one of its BidetSpa products for a giveaway contest on the other site where I write – 5 Minutes for Special Needs. We had a lot of really amazing entries for the contest, but the team at 5MFSN chose Sara as the winner. Here is a snippet from Sara’s prize winning comments:

I have a developmentally disabled daughter who will be fourteen at the end of October. Happily she has been using the toilet successfully for 7 years but has not been able to learn the complexities of properly wiping. Unless an adult is present to do it for her she "skips it" altogether. I'm always worried about my daughter's hygiene. It's difficult enough to be different than your peers when you are a teenager, but if you also smell it really has a negative impact!

Sara’s name and contact information was sent to the Bidetspa company, and they immediately shipped out Sara’s prize. Here is the email she sent me upon receiving the product:

I just wanted to let you know I received the BidetSpa on Thursday. Here's the story of its arrival: Jamie had just come in from her school bus, the respite worker had just arrived and then the phone rang. It was my neighbor. "Hi Sara, I just wanted to see if you were home because I have a package here for you, (giggle, giggle)" "What could that be?" I answered. Her reply was muffled, probably because she was trying to hold back her giggles, but it sounded like: mmmrrfflspa from ffrflbutts.

"What?!??" I asked. She said she'd bring it right over leaving me puzzled as to what she was talking about. When I opened the door and saw her with the box I burst out laughing. "It's my toilet seat!!!"

We all gathered around and opened the box and I told her the story of how I'd won this prize. The box contained a lovely note from Paul J. Sochacki of the CleanButt Company.

My 19 year old respite person wasn't sure about the name CleanButt but she was very impressed with all the functions of the toilet seat. She thought we might have trouble getting people to leave the bathroom! My neighbor, who also has a special needs child, took one of the promotional DVD's with her to watch with her husband.

It is going to take us several weeks to get the bathroom ready to install the seat. We have to get the new toilet and linoleum installed as well as an outlet put in that will be closer to the toilet. I'm very motivated to get this work done so I can try that seat out!!! I'm hoping to have it working before Thanksgiving when my extended family (14 of them) is coming over.

Friday, October 24, 2008

Did you think I wouldn’t notice? Yes, Ashley can be quite the enigma at times, but even then, her unpredictability is predictable.

But drinking coffee? Never would I have predicted that.

Drinking unsweetened iced tea? Nope, not that one either.

Then on Wednesday she walked into the house clutching a paper sleeve of Ritz crackers, only half full because she had eaten the other half. Ashley doesn’t eat crunchy things other than Cheetos. She is a mashed potato, mac and cheese, pudding kind of girl.

For dinner last night, she ate minced pork barbecue. She doesn’t eat meat and especially not something minced.

So who are you and what have you done with my daughter?

Also, for the last week, whenever she comes home from school, she insists on changing her shirt and the new shirt must be red. And, she will only sleep in something that is red. Is red the color of uniform your people wear?

that our newest family member, Rocky the dog, has made a very smooth transition to his new home

that the beautiful Mari and her Mom and Dad visited last Saturday. Mari is one of our Dreamcatcher kids!

for the CPR and First Aid training that Corey’s JROTC provided to all cadets last Sunday

for the many different types of birds that are visiting our yard as they migrate South.

that I have been able to reduce (with no negative consequences) the amount of one of Ashley’s medications. My goal is to reduce as much as possible.

that both our cats are finally starting to adjust to having a much bigger four-legged creature around. Winky finally came back to sleep with me Wednesday night. She had been spending every moment of the day under my bed.

that Chip has submitted one of his college applications. Now there are only three more to go…and then we wait for responses and for a financial windfall so I can afford to send him to college!

that gas prices in my area have dropped significantly. Yesterday’s average price was $2.30!

that I got 5 straight hours of sleep last night. Thank you, Ashley and Melatonin.

Wednesday, October 22, 2008

Once Upon A Halloween is the theme of Special Exposure Wednesday over at 5 Minutes For Special Needs this week. Melody asks whether or not your Halloween fun has ended because your children are growing up. Yes, Melody, my kids no longer want to dress in costume. I am reduced to dressing up my animals, and as you can tell, they just love it!

Tuesday, October 21, 2008

Ashley has discovered coffee! This child of mine who would drink nothing but water for the last 11 years now wants coffee. Miss Amy, Ashley's intervener, said on several occasions at school Ashley will sneak up and take a sip of her coffee. Just what this child with ADHD needs, eh?

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My son, Chip, is filling out college applications and trying to get letters of recommendation from his teachers. But that's not as straightforward as it appears, at least in my school district. Knowing that most of the seniors will be applying for college, the guidance office at school sent home a list of questions for parents to answer. The guidance counselors then take those answers and turn them into letters of recommendation, ostensibly from teachers. So what is this practice teaching our soon-to-be-adult children?

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I've still heard nothing from our state Department of Education regarding the complaint I filed the first week of the current school year. I guess they are still 'investigating'. As I so cynically asked in my first post, I wonder if this issue will even get resolved this current school year?

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There is a Delphi Forum site that I visit regularly called Virginia Special Education. While there are some questions specific to Virginia, the majority of the discussions are about special education in general. I invite you all to join in (you will need to set up a free account) because there are a lot of really experienced parents ready to help on any special education matter.

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And finally, have you had your flu shot yet this year? If not, I urge you to do so. You will not only be protecting yourself but also your children, the rest of your family, and all us other immune-supressed people with whom you come in contact!

Monday, October 20, 2008

Ashley’s Mom: I heard about this great little boy today that really needs a home and…

Amy: Wait, you CANNOT adopt another child!

Ashley’s Mom: But he’s so cute, and Amy, he lives in a hospital. No child should grow up in a hospital. He needed to be there early on, and he does have a trach, but that is all. He’s young, he’s spirited, and he’s really smart. He just needs a family to call his own.

Amy: You CAN’T. You already have 4 kids, three with significant disabilities, and your health isn’t the greatest. Do I need to remind you that you have Lupus and Rheumatoid Arthritis? Do I need to remind you how tired you are most days? Do I need to remind you that you are a single mom and that you have to work a full time job? Come on, let’s be realistic here.

Ashley’s Mom: I know in my brain that you are right, but my heart wants to ignore my brain. It probably doesn’t even matter because any social worker in their right mind would probably have all the same reservations that you do. But he’s just such a great kid with so much potential.

Amy: I know, and I wish it could work out, but you have to think of your current situation also. You know I’m right…

Ashley’s Mom: I know, I know. OK, let’s change the subject. The kids and I visited the SPCA today. They had some great dogs there, and the kids were so excited and sad at the same time. Since Lizzie Dog had to move to her retirement home, the kids have wanted another dog so badly…

Amy: Wait! You adopted a dog, didn’t you?

Welcome Home, Rocky!!

Rocky is a 3 year old American Foxhound. The SPCA feels he was a hunting dog that wasn't hunting so the owner just released him. He very calm and loving, and great around the kids. He has already learned a couple of sign language signs, and he is a great walking partner for me at night. We're planning to let him become a therapy dog!

Saturday, October 18, 2008

Ashley shared one of her pipecleaner creations with the lovely Maizie and her equally beautiful mother, Marla, over at All That Is Dazlious. And Marla took a great picture so she could share the creation with all her readers.

Friday, October 17, 2008

For the first time ever, over 5 million Virginians are registered to vote. And the best news – 40% of the newly registered voters are under the age of 25. We hear and see a lot of bad news about young people, but I’m very proud of those in my state we are taking their responsibility to vote seriously.

She is 14 years old, weighs only 48 pounds, and her father and stepmother only allowed her to drink 6 ounces of water a day. Besides toast, she took in no other nourishment. Her brother was fed normally, and even the family dogs were fed normally and had recently been taken to the vet. Her parents have been arrested and as the article points out, may get up to 4 years in prison. 4 years??? Is that all???

The girl’s teacher complained in 2005, but Child Protective Services left the girl in the home and ordered the stepmother to go to counseling. Doesn’t seem to have worked, now does it?

Tuesday, October 14, 2008

I've been thinking a lot recently about Ashley's transition to high school next year. It has the potential to be a frightening experience for Ashley because everything will be new - new school building, new bus driver, different schedule, new teacher, new assistant, and a whole lot of new children.

In the past, I have tried to prepare the new school staff by meeting with them prior to the beginning of the year and telling them all about Ashley. I focus on all the positive things and about how much she is like her peers rather than how different she is. But, I also have to share the extent of her disabilities so preparations can be made. One of the things I have done in the past is conduct a 'simulation'.

A simulation, as my state's deafblind project has taught me, is taking a sighted and hearing person and putting a blindfold on their eyes and plugs in their ears. The person under simulation is then asked to do something, and supposedly this exercise gives them an idea of what life is like for Ashley. Except it's not accurate...

I understand the simulation exercises in theory, but in practice they make me uncomfortable. And the end of the simluation I hear a lot of 'awww, poor thing', 'wow, how does she get through each day?', and other such nonsense. I hear pity and I don't like it. But, I've never been quite able to put into words all the reasons that the simulation exercises bother me - and then I found a post from Joel at the NTs Are Weird blog. He has explained it perfectly, and I think it would be well worth your time to go have a look.

Monday, October 13, 2008

Sometimes something so unexpected happens that you’re caught off guard. But if it is a good unexpected, it can brighten your whole day. One of those good unexpecteds happened last Friday.

I decided to take the kids out to lunch at one of their favorite places, the River City Diner. It’s a restaurant that strives to be like the diners of old, and for the most part, it succeeds. The menu is filled with diner staples such as meatloaf, mac and cheese, and breakfast any time of day. The walls are decorated with 1950’s replica memorabilia, and doo-wop music plays from the jukebox. So, it didn’t surprise me at all when the waitress greeted us with a ‘Hey, Sweeties.” What did surprise me was what happened next.

The waitress signed to Ashley. She signed ‘good morning, how are you today, Beautiful?’ She asked all of us what we would like to drink, and signed the same thing to Ashley. When she returned with our drinks, she asked me if she could show Ashley that her water was now on the table. I responded ‘Yes’, and the waitress gently took Ashley’s hand and put it around her water glass. Ashley signed ‘Thank you’, and without missing a beat, the waitress asked for our orders. When she got to Ashley, she signed, “What would you like to eat?” Ashley signed ‘Macaroni and cheese.” The waitress then left, and I sat speechless.

The exchange with the family, and especially Ashley, was completely natural, almost as if the waitress took orders in sign language every day. She was sensitive to Ashley’s vision issues without even having to ask me what was wrong, or what her vision was. She took close note of the appearance of Ashley’s eyes, and rightly assumed she would need some assistance. She didn’t speak to Ashley as if she were a 5 year old – she didn’t ignore her and talk to me instead like a lot of people do. She gave Ashley the same respect she gave every other member of my family.

The waitress may have been working in a low-paying, often thankless job, but to me she was an angel – a person who ‘gets it’ – a person who should be a role model for the majority of other people in the world.

When it was time to leave, I felt like hugging her. Instead, I signed ‘Thank you very much”, and needless to say, left a large tip.

Friday, October 10, 2008

On October 7th, I wrote about a young girl who had been failed by both the system and, in my opinion, her family. That same day, the following story of a mother, overwhelmed with the events of her life, took both the lives of her children and herself.

This mother has also been failed by the system. One of her daughters was diagnosed with a rare disorder called cri du chat syndrome. Like many rare disorders, very little support is available at the local level - the level where parents are most likely to seek help.

There is a national support group, but again, what this mother needed, and what most of us raising children with disabilities need is local, available support. If you have support groups where you live, I urge you to attend and participate. If you don't have a support group, I urge you to contact a national organization and start one in your area.

We all need support - even those of us who think we don't feel overwhelmed.

Wednesday, October 8, 2008

I wrote two posts in the last month that generated a lot of comments. So, I thought I would update you on those issues.

First, I wrote about Ashley’s not sleeping much. I asked my readers for suggestions, and Melatonin was a constant response. Well, I have been giving Ashley 3mg of Melatonin each night for several weeks now, and I am happy to report that it seems to be helping. She still doesn’t sleep through the night, but she is only up 1-2 times, and if you’re read my ‘lack of sleep’ posts in the past, you know that is a huge improvement! I’m actually feeling physically better than I have in years. Thank you all for your encouragement and advice!

Secondly, I wrote about the complaint I filed the first week of school with my state Department of Education concerning the lack of qualified instructional assistant services for Ashley. Although her IEP calls for 6.75 hours each school day of services from someone who is “sufficiently proficient in sign and speech so as to provide a language role model” for her, the school district has not hired anyone. A classroom assistant has been filling in, and while she is more than qualified, there are times when she is not available for Ashley. Thus, I contended in my complaint that the IEP was not being followed.

The school district had 10 business days to respond to the Department of Education, and here is an excerpt from their response letter:

“[school district] denies that any state or federal regulation was violated related to the provision of special education services to Jacob.”

Wait – who’s Jacob? Even though the letter was addressed to me, and had a RE: at the top with Ashley’s name in it, the body of the letter referred to the mysterious Jacob.

I feel so much better about the complaint knowing that my school district thoughtfully considered their response to me and didn’t just plug Ashley’s name into their standard denial letter……

Tuesday, October 7, 2008

She was eight years old when I first met her, and I didn’t need anyone to tell me that she had a diagnosis of Autism. She never spoke. She wouldn’t look anyone in the eyes. She bounced a ball ALL THE TIME, stopping only for a few hours sleep each night.

Her parents were well to do, intelligent people, although there seemed to be a bit of a disconnect between them. Dad talked of helping his daughter bathe and dress. He talked about having to sit on her just to cut her nails. He talked about the food battles and what a struggle it was to get her to eat something healthy. Mom talked about the things Dad did, and about how much she needed respite from the daily grind of raising her daughter.

Then a few years passed before I saw the girl again. She was now in the 7th grade. She had become slightly aggressive and still she bounced the ball all the time. Then came 8th grade. The girl was even more aggressive. She hurt several people at school, some of the people even requiring medical intervention. She had begun to speak, but the words were parrot-speak – “Pack your sh*t and leave”, “Who the hell do you think you are?”, and “Just leave me alone.”

Freshman year in high school has arrived. The aggression is out of control. Sexual activities are initiated frequently and in extremely inappropriate places. Escape tendencies have flourished. The school district, at least in this instance, has very little choice. The girl must be moved to a much more restrictive school placement – unfortunately a place where she will learn more than academics. The parents, probably disconnected permanently at this point, refuse to intervene. They could make a difference. They could change the school district’s approach. But they, along with the rest of us who are powerless to intervene, will watch their daughter descend even deeper into a place lacking the supports she needs.

Monday, October 6, 2008

I was so thrilled when Dancing With The Stars started this season because the hunky Maksim was coming back as one of the professional dancers. He was not on the show last season, and it was, in my humble opinion, a less than exciting show. But this year he came back. And now, it looks like he may leave...

Rumor has it that Maks's partner, Misty May-Treanor, has suffered an injury and will not be back. That means Maks will not be back.

So many times people have said to me what a wonderful person I must be to want a child like Ashley – so patient, so committed, so…special. Hearing those words always irks me. I don’t feel all those things – I don’t feel like I deserve any special recognition for the life I have chosen.

Before Ashley came into my life, my parenting was a pretty easy job. I had my birth son, Chip, and he has always been a great kid. Even now that he is 18 years old, I’ve never had to deal with issues much more complicated than the occasional smart mouth. With Chip, I’ve had it pretty easy as a parent.

But, I think God knew I was capable of handling more. Maybe He even felt like I was getting lazy and not realizing my potential to do something positive in this world of His. That’s why I believe He chose me to parent Ashley.

Having Ashley as a daughter has made me a better person – one who has cast aside the ennui, and resolved to make a difference in the world. I have learned to stand up for myself and for others. I have learned that people, sometimes even one person, can make a huge difference. I have learned that if injustice is allowed to continue, it only festers and grows more widespread. I have learned compassion, and I have learned how to tell that from pity. I have learned to love with a depth I never knew possible, And, I have learned how to support another human being without compromising their personal independence.

I am not special, but I am Ashley’s mother, and she makes me feel special each and every day.***********************************************

While the following piece from Erma Bombeck contains some phrases that today are considered less than politically correct, it is still a very powerful statement. If I could change anything about it, it would be the title.

The Special Motherby Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.

She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."

That project is now guaranteed at least $100,000 in funding, but still needs your help. The second round of voting has begun and the project with the most votes will receive $1.5 million. Your votes will determine how many lives the project can save. Please, let's keep this conversation going and the awareness out there.

When I feel passionate about something, I really hate to compromise. I'm sure my regular readers have sensed that. Be it school administrators, medical staff, people who ignore the rights of people with disabilities, or editors. Even though I may agree to the compromise, it doesn't mean I agree with the outcome. Having to compromise, makes me cranky. Today I am very cranky.

The women featured in the film spend hundreds of dollars on "reborns" -- dolls with beating hearts, tiny veins and other bizarrely realistic features -- and treat them just like actual babies, diaper changes and all.

Ashley Lynn

Why is this blog named Pipecleaner Dreams?

Who I am...

I am Ashley's Mom and the luckiest person in the world. I've often heard that if one is 'good' in this world, they will receive their rewards in the next. But, I have already received my reward - I have been given the privilege of raising this beautiful child. I'm a single parent of 5 children, 4 of whom have significant disabilities. They are all so very special and each has their own piece of my heart.